Ok maybe the word fix was a wrong choice and I should have used stabilize or manage because I know it won't ever go away. But I feel like the minute he gets a rash or starts reacting we have to address the situation ASAP because it won't just go away or subside it will just get worse!
My husband is doing so much better than last yr where he didn't get out of bed for months and was miserable. He continues to have this weird joint pain that never goes away, he's on aspirin for his prostoglandins and that doesn't help and I'm worried about damage to his stomach. I just want to make sure his joint problems don't get worse.
His exhaustion could be from the mast cell stuff or is it hashimotos, maybe both. I want to make sure I'm doing everything possible so that his tyroid hormones are properly regulated. Conventional dxs only give you levoxyl but there's the whole T4/T3 stuff that they never address.
I'm not sure what's going on with that Kit gene study but I know Dr Wilson said he's still waiting for them further study it.
I have the whole elevated IgE situation that no one really knows why it fluctuates between 9,000 and 15,000...I always thought that was from the MCAD but its praobly a different autoimmune thing...his stat3 gene was not mutated for hyper IgE syndrome so Genome is sequencing his whole DNA to see if there's a new mutation...but this is going to take over a year yo finish.
For months this forum was my lifeline...I remember when I first read some posts and thought "oh that won't happen to us, thats not his situation" well practically everything on this forum has happened to him. From reactions, crazy anwers from dxs, ER visits where they'd tell us he just had a fainting spell, the emotional roller coaster, realizing that I might not get an answer. This forum has taught me so much, to be empowered as a caretaker, go with my gut and most of all I don't feel so alone and helpless!
I only doubled my husabnds meds because people on here where taking more than him...almost after the first dose he immediately felt better. We only went to Boston because I finally read Deborahs own story and figured we should make the effort to go...best decision we ever made!!!
I wish there was a magic pill or I could just kiss it and make it better. I feel like 30% is having the right dxs, 30% is having the right meds, and the rest has to come from you as far as lifestyle, foods you eat, minimizing stress, controlling your emotions, environmental toxins, adequate sleep ect...trying to control this extreme heat is really hard...it's 106 today and humid!
This has changed our lives forever but I refuse to let it ruin my life...I will grow from this, I don't take anything for granted and it's made me love my husband in the most profound way...so there are some positive aspects...it's taken me a year of complete misery, pain and feeling like I was having a constant panic attack to get to this point!
Thank you all for sharing your stories and helping to educate people like me!